Monday, January 31, 2011

Orange

These two may not say much, but they know how to enjoy a Friday night.(Mac and his girl Sarah after some pool-time fun on a recent weekend getaway.)

Tomorrow night's class will be week 5. Week 5 of our commitment to the Hanen speech therapy courses. Week 5 of grandma showing up to run the show for a night while I steal away to sit on a folding chair in a u-shaped configuration of plastic tables from Costco with 15 other parents whose children are in some stage of silence as well. Week 5 of becoming painfully aware of any and all little things we might (or might not) be doing at home to enable Mac's mums-the-word attitude. The truth is that four months into speech therapy and five weeks into Hanen training, Mac still doesn't say a dang-darn thing.

To be honest, the focus of the Hanen program surprised me. I expected to show up and learn techniques for teaching McKay how to be a communicator. But instead, the spotlight was turned big and bright on all of the little things I might not do well - letting him lead me in play, getting on his level when I talk to him, waiting, waiting, waiting for him to answer me. Was I the problem? Oh, please let it be that easy.

As the hours of the first course passed on, I could feel myself losing it. While I pride myself on being decently self-aware that I have not dealt with much of anything that goes along with the grab bag of emotions I've kept securely stowed away for the past two-plus years, this class blindsided me. The dam was about to spring a leak and it was time for me to leave. As class wrapped up, I promptly ended a conversation with one of the leaders and high-tailed it to my car. Crap. This wave of emotion was going to take more than a few deep breaths to scare back into hiding.

I called Matt. I was sobbing and hardly coherent. Of course he doesn't talk, I half yelled through the phone. Why would he? We have effectively ignored him every time he told us, no, or stop, or that hurts, or I don't want to swallow that medicine, for his entire life. At what point does being held down, comforted through lies that everything is going to be okay and then put back through that entire experience again and again, start to shut a little soul down? Forget the speech therapy. This kid will more likely need a slush fund for some serious counseling through the years. What have we done to him?

I cried for a solid hour. Very, very rare. Maybe the first time ever. No. No. No. Not now. Shut it down. Shut it down NOW.

As the classes have progressed, as we've been videotaped interacting with him and, along with others in the class, volunteered to have our homes, children and most tender worries put on the big screen to be tested against the criteria for parents who successfully encourage speech, I remain pretty raw about the whole situation. I continue to struggle through some of the 'why' of McKay's silence. Is it fixable? Will he always face an uphill climb when it comes to language or academics or life in general? Why can't something, anything be easy for this kid?

I know - he's two and a half and I'm being a bit dramatic. But it's where I'm at right now.

I am also to the point where I realize that the only thing I can change is me. The rest is up to Mac and God. And maybe that's what this entire Hanen journey is all about -- reminding me that whatever the issue, I can only figure out the most positive and productive things that I can do to bring opportunity to the situation and continue to do that -- over and over and over again. Whatever the situation, whatever needs changing, your child, your parent, your neighbor, your spouse, we can never change someone else. We can only change ourselves. So that's what I'm working on right now. Changing my patterns. And it's brought some unexpected blessings.

I've realized that I'm not as hungry for words as I thought I was--I'm hungry to connect. McKay and I are bonded, permanently. Forever. And ever. And ever. But it's the day to day connection of knowing what he wants, learning his favorite color, animal or book--that's what I really want.

Little by little, I am getting a bit more of that now. In the past two to three weeks, we've had a lot of eye-to-eye conversations and somehow I think he's understanding more. Just today I came home and laid on the floor next to him and we held our hands up in the air, counted fingers (he pointed and I filled in the blanks), I said 'yea' and 'clap.' And he did. He put his two chubby paws together and clapped. He laughed and I felt happy. Simple, simple, simple moments.

And then I remembered, it's orange. He always chooses orange first whenever we open the crayon box. Orange circles, orange lines. Words or none, I know this kid. And we'll find his voice soon enough.

10 comments:

Wow. Whether McKay is speaking volumes or not, Mindi, you always seem to find the right words to bring me to tears. Every Single Post! SHEESH!

This program sounds interesting... and highly ineffective for families who need no blame and guilt stuffed down their throats. We get that every day without someone trying to inflict it. I admire you for taking the principles they are teaching and learning how to incorporate them at home. I think after walking out the first week, I would have decided not to return. I wonder what wisdom McKay is just waiting to verbalize...wisdom he has most certainly gained from his absolutely incredible parents. I really look up to you.

Beautiful. You should write a book. Seriously. And that sweet, sweet boy just makes my heart swell. You are amazing parents. Don't ever doubt that. I think I could use a Hanan class or two. I am not a great communicator with my kids. It could do me (and them) a world of good.

I always look forward to reading your new updates. You probably truly know your little Mac better than anyone knows their children because of this opportunity you have been handed. You are honestly one of the most humble, honest, spirited and valiant women I've met in my life. Give that sweet boy many hugs for me and know one of them is for you.

Words or no words, Mindi, I hope you see how much McKay loves you in his actions everyday. I pray that this year Mac will say his first word, and you shed your last tear. Enjoy every moment with him - this was a beautiful post!

Oh Mindi. You are truly amazing. You know that, right? You also know that every ounce of attention that little boy has received has been out of complete love and concern? How sad that you feel guilty for it (but I can totally understand). Man you're a special mom. I think just that alone has made that little guy turn so many corners. He'll turn this one too my friend. I miss you terribly. Do I ever get to see you again? Please?

I agree with the others. A book is your future. The parallel between the son who is not speaking, and the mother who speaks/writes with such a deep resonation is compelling. I'd like to hear more on McKay's 'other' communication. Clearly he is, he just is using other means than with his voice. I find myself coming back to this post again and again. We are with you Mindi, and McKay, always.

I have a sweet nephew who didn't speak until age 3 1/2.After a lot of worry, prayers, therapists, nothing seemed to be working. Then one day, it just happened. He began to speak. Over the course of several weeks he was talking! Now he is the top reader in the 2nd grade and doing great.

With two of the most incredible parents on the planet, Mac can't lose. Someday, he will use those "worth the wait words" to thank you for being such an amazing mom.

Hi Mckay,My name is Jenna and I came across your site. U are an amazing brave courageous little guy. U are a hero and will be in my thoughts and prayers.I was born with a rare life threatening disease.http://www.miraclechamp.webs.comI love it when others sign my guestbook.

Live. Laugh. Love.

About McKay

Mr. McKay is a miracle. He was diagnosed with a soup of congenital heart defects while still in utero including: double inlet left ventricle (DILV), Transposition of the Great Arteries (TGA), a large ASD which has now been modified to create a single atrium, pulmonary atresia, and dextrocardia. He has undergone a series of three open heart surgeries to reroute his plumbing into a flow more likely to meet his growing body's demand for oxygen. He is post BT Shunt (August 22, 2008) and post-Glenn (November 25, 2008), and most recently traveled cross country to have the Fontan procedure at the Children's Hospital of Philadelphia (July 9, 2010). Today, McKay is a growing near-three-year old challenged with developmental hurdles we are anxiously trying to help him overcome. McKay offers heart baby hope of the most robust proportions. This blog chronicles our adventures.